Family, New Beginnings and Other Updates

Family, New Beginnings, and Other Updates

Every year, my Kepple family has a cookie baking day right before Christmas.  It is a fun day.  My Grandma Kepple, Aunt Nancy (Bard), my mom, Aunt Debbie, sisters and cousins get together and make dozens and dozens of cookies.  We take cookies to neighbors, family, the local Veteran's center, and we also save some for our family Christmas gatherings.  It's great to spend the time together, and I look forward to it every year.  I always wear my Great-Grandmother's Christmas apron.  Celtan and my Pap Kepple were our number one taste-testers.  Celtan and my nephew Mason also expertly decorated some of our sugar and gingerbread cookies. 

We left the baking festivities around lunchtime.  Celtan had karate, and after that we were taking a family trip to Erie.  Jason's brother and his wife, Eric and Sandy, had their long awaited twins on Friday, December 19th.  We were so thrilled for their arrival, and so we made the trip up to Erie to see them.  We were able to go into the NICU to see the babies.  They are precious little Christmas miracles, and we welcome them with love into our family. 

In the NICU, I was flooded with flashbacks and memories of my time spent at Magee's NICU with Elizabeth. As a parent, a preemie in the NICU can be a scary experience. It certainly was at times for us.  However, when you are blessed with a preemie, you get to see and experience things that many other parents never get the chance to.  You get to see them grow, overcome, and develop in ways that largely take place unseen in the womb with full term babies.  Plus, there is something special about babies that you fight so hard just to get them here, keep them here.  I'm happy to report that my new niece and nephew, Livvy Jeanne and Major Vaughn, are doing well.  They will be in the NICU for a few weeks, but they are doing very well.  Eric and Sandy will be amazing parents, they are amazing people, and Livvy and Major couldn't have been blessed with better parents.  We love them all, and if you are praying for us, then please add them to your prayer list.  They are much awaited miracles of life, and they have a lifetime of being cherished ahead of them.

Celtan really enjoyed the NICU waiting room.  He stayed there with Elizabeth and Uncle Eric while we were visiting, as he was too young to go back and see his new cousins.  I don't often mention Celtan in the blog, but he is such an awesome kid.  He is super into Santa this year, and he took the letter that his elf delivered to him from Santa.  He had to show everybody the letter.  I've included some pictures of him from our visit to Erie. 

Celtan was in the Christmas Play at church on Sunday.  As I am bustling around getting ready for the holiday season, the message and innocence of the children in the play was refreshing.  They all did a great job.  Celtan also was over the moon with excitement over getting to see Santa at my Grandma Kepple's. He made sure to give Santa a cookie before he left.

We had both kids to the doctor yesterday.  They both have a virus, runny noses and coughs.  They seemed much better this morning, and so we are hoping it will be gone soon.  It's always something!  I hate it when they are sick. 

On other note, I have been searching far and wide for specialists that can give us some insight into Elizabeth's brain MRI findings.  So far, I have had success.  She was accepted, and we are in the enrollment process, for a research study at UC San Francisco at Dr. Elliott Sherr's research lab.  This study is looking closely at the brains and genetic factors at work in individuals with Corpus Callosum anomalies.  Right now, our participation is going to be done remotely. I would like to try to get out there this summer and take her to the lab for additional insight and testing, but that will be only possible if we have the funds to do so. 

I also have found a specialist at Boston Children's Hospital in PVL (Periventricular Leukomalacia) and CVI (Cerebral Vision Impairment). Her name is Dr. Janet Soul. We have an appointment with her in Boston in June.  So, we will be making a little trip to take Elizabeth to see her and hopefully gain some insight.